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By Lucy Notarantonio
Senior Reporter
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I've spent years caring for patients as a nurse, but becoming a mom has given me a completely different perspective on what families go through when facing uncertainty and difficult medical decisions.
That uncertainty began before my son Ollyver was even born.
From very early in my pregnancy, we were having extra scans because of a subchorionic hematoma, which is a collection of blood that forms between the wall of the uterus and the sac surrounding the baby during pregnancy.
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At our 12-week scan, we were told the the innermost layer of the amniotic sac that surrounds and protects a baby hadn't fused properly.
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During that time, I began researching why the membranes hadn't fused and came across Amniotic Band Syndrome (ABS), a rare condition in which strands of tissue from the amniotic sac can become entangled around a developing baby.
In rare cases, it can tear early on, creating thin bands of tissue that float in the womb. These bands can wrap around parts of the baby's body, such as the fingers, toes, arms or legs.
As the baby grows, the bands can tighten and restrict blood flow, potentially causing deformities, webbed fingers or toes, or, in severe cases, amputation. They can also affect the baby's head, face or spine.
I asked the doctors whether ABS could be a possibility, but they reassured me it was extremely rare. Research suggests it affects between one in 1,200 and one in 15,000 live births, and I was told there was no need to worry.
But at a more detailed 19-week scan, I could see that something wasn't right.
After the appointment, we were taken into a room and told ABS was suspected. At 20 weeks, they offered a termination.
It was one of the hardest moments of my life. I wasn’t ready to make that decision based on one scan, so I asked for another one.
At the following scans, we were initially told that the bands weren’t attached and were free-floating, which gave us some hope.
We continued to be told this for quite some time. It wasn’t until around 33 weeks that we were told the band had attached to Ollie, around his nose and possibly the side of his face.
For so much of the pregnancy, we simply didn’t know what his future would look like. We had to take things one scan at a time and hope that our baby would make it here.
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We didn't know how severely his face would be affected. We didn't know whether he would survive, what his development would look like or what quality of life he might have.
Looking back now, I wish I could go back and reassure the scared version of myself that everything was going to be okay.
His life may look a little different than we once imagined, but different doesn't mean less.
Ollie has undergone around five procedures so far, including several involving his eye.
Every surgery has been difficult.
As a parent, you hand your child over to a surgical team and then wait. No matter how many times it happens, that feeling never gets easier.
One of the most emotional surgeries took place when Ollie was around 13 weeks old. Surgeons removed a skin flap from his forehead and released some of the bands affecting his face.
Seeing him afterwards was incredibly emotional. For the first time, we could begin to see what his face might look like without some of the restrictions caused by the bands. His nose appeared smaller, and it felt like we were seeing new possibilities for his future.
There was relief, sadness and hope all at once.
Another difficult procedure took place in May, when Ollie became dehydrated after surgery and required IV fluids. Watching him go through that was heartbreaking.
He is now one years old and the current focus of Ollie's treatment is his eye.
Because the bands affected his right eye and eye socket, the socket hasn't developed normally. He currently has an eye expander to encourage growth of the socket and surrounding bones in preparation for a future prosthetic eye.
The process hasn't been straightforward.
The area can become painful and infected, and watching him deal with that is incredibly difficult as his mom.
There are still unknowns ahead, but the goal is to give him the best possible outcome and help his face continue to develop.
When people look at Ollie, they may see his scars or notice that he is blind in one eye.
I see a little boy who is cheeky, outgoing and full of life.
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He loves attention. He brightens every room he walks into. He is determined, constantly on the move and happiest when he's surrounded by people.
He's already overcome challenges that most people couldn't imagine facing.
That's why I don't think of his future in terms of limitations.
I think of it as normal.
ABS has affected part of his appearance and his vision, but it does not define who he is or what he can achieve.
I don't want his story to be about everything that happened to him.
I want it to be about everything he gets to do.
If there's one thing I hope people take away from our experience, it's that a diagnosis does not determine a child's future.
During my pregnancy, we were given countless unknowns. We were told termination was an option because of how severe the condition could potentially be. We didn't know if Ollie would survive. We didn't know what his face would look like. We didn't know what kind of life he would have.
Now, when I look at him, I realise how wrong it would have been to let fear define him.
He is not his scars.
He is not his disability.
He is not his missing eye.
He is not his diagnosis.
He is Ollie.
He is loving, funny, determined and completely full of life.
Our journey has changed our family forever, but I wouldn't change him for anything.
Maddicyn Brokenshire, 28, a registered nurse from Timaru, South Canterbury, New Zealand, began documenting her son Ollie's journey on social media after finding few success stories while researching his condition during pregnancy.
Reference
Pape K, Gorla SR. Amniotic Band Syndrome. [Updated 2025 Jul 7]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2025 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK545283/
Contact Newsweek editors on this story: Charlotte Nisbet and Liz Perkins
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